Hope Against Hope

Instead Of Charity, Family Wants Confidence.

December 22, 1994|By DEBBIE CENZIPER Staff Writer

"Little buddy," his dad says, standing by the Christmas tree. "What do you want from Santa?'' And 4-year-old Danny Nelson answers, thinking hard, in words so slurred only his parents can understand. "Bauny," he says, hands balled up into tiny fists in excitement. "I want Bauny."

For a boy who could barely speak a year ago, let alone put a sentence together, telling his father that he wants more Barney dinosaur toys to add to his collection is a crucial milestone for this beleaguered family of four.

Danny was born with expensive cardiac, respiratory, allergy, communication and leg problems that have eaten up much of the Nelsons' paychecks and dashed any hope for a savings account.

The family has not qualified for federal disability payments for Danny's problems and is forced to pay hundreds of dollars each month on doctor's bills. Danny's older brother also has allergy problems that require medical care.

To make matters worse, Rick Nelson has been laid off twice from machinist jobs, and now juggles maintenance work at 13 properties in West Palm Beach. Michelle Nelson runs an ailing apartment complex now in foreclosure, and is given a cramped two-bedroom apartment rent-free as compensation.

They may lose the apartment - their "saving grace," as Rick Nelson puts it - if the complex closes.

But the Nelsons don't want pity. They don't want charity. They don't need free food or toys for the children.

All they're looking for this holiday season is hope, hope that Rick finds a better job, hope that the apartment complex stays afloat, and hope that the little boy with a Barney Fan Club certificate on his bedroom wall will stay healthy.

"I'm a proud person," Rick Nelson says. "I don't want food stamps or gifts. There are a lot of people more misfortunate than us. I just want the best for my kids because without them, nothing else matters."

Danny attends preschool at the Rehabilitation Center for Children and Adults in Palm Beach. He spends hours each day with teachers and therapists learning how to do the things many children take for granted: speaking clearly, dressing and feeding himself. He was born in 1990 with Opitz Frias syndrome, a rare genetic disease that causes severe birth defects.

Danny has wide-set eyes, lower ears and a small chin. He also was born with club feet - his legs were shaped like the letter J - and wore casts all the way up to his upper thighs for 3 1/2 months as an infant.

Now, he wears braces on his legs, and is partly supported by the Shriners Hospital for Crippled Children in Tampa. A "My doctor loves me" sticker decorates the braces on his feet; tiny Lion King sneakers peek out from underneath.

Academically, Danny is on track with other 4-year-olds and often gets frustrated by his physical disabilities.

"He gets very angry when he can't do what he wants to do," said Leslie Kelly, his preschool teacher and speech pathologist. "He's not real good at dressing himself. He wants to do it so bad. He gets both legs caught or he can't get his arms and head in. We want to build his self-confidence. We show him strategies, different ways of doing things. And then he feels better."

The family is now worried about Danny's heart, where doctors have found a deformed valve.

Adding to the worries are financial problems that never seem to go away.

The Nelsons declared bankruptcy last year because they owed more than $50,000 in medical bills.

Christmas this year will be lean.

"I worry all the time about Danny," said Michelle Nelson, watching her giggling son play with marbles at the Rehabilitation Center. "But we're hoping for the best. That's all we can do. Hope."